LifeScape is “a light in the journey” for toddler fighting paralysis
On the morning of May 27th, 14-month-old Brooks Plienis started his day like any other. A happy baby, he was the center of attention for his parents, Derrick and Tristin, and his sisters, four-year-old Aubrey and three-year-old Willow. He had been walking for two weeks.
Brooks had a normal day at daycare, but Derrick noticed he was a little bit crabby and “shaky” when he picked him up that afternoon. By evening, Brooks was unable to stand, and the shaking was worse. A trip to urgent care brought a diagnosis of vertigo from a chronic ear infection. Tristin put Brooks to bed and stayed with him. During the night, she noticed that he could no longer roll over or move his legs. Frightened, she drove him to the emergency room. After blood tests, a CT scan, and an MRI, a Chiari malformation on the brain was identified, in which brain tissue is pushed into the spinal cord.
“I was told this was something that he could be fine with and live a normal life, so I was feeling confident we would get into surgery and things would be okay,” says Tristin. But then they heard the words, “We can’t treat him here” and Brooks was taken by ambulance to another hospital. “This is when my real fear set in,” says Tristin. “What could be so bad that we are being sent somewhere else?”
Brooks was admitted to the PICU (Pediatric Intensive Care Unit) and his parents were told the devasting news of a second diagnosis: Brooks had transverse myelitis and was paralyzed from the chest down. “That’s when our world crashed down,” says Tristin. “This hit us like a ton of bricks. We didn’t know there was a second thing wrong, so on top of all the fear we had already, we then got pushed down even further. Our stomachs and hearts were on the floor. We didn’t even know what to say to each other, and I can remember I had to tell myself to breathe. It was the worst moment of our lives. How was so much wrong with our perfect little man who was JUST FINE yesterday?”
While Chiari malformations occur in about one per thousand people, they often are not problematic and can remain undetected. Transverse myelitis, however, occurs in only about 1400 people in the world each year. It’s an inflammation that damages the insulating material covering nerve cell fibers. A number of things can cause it, including infection, but the exact source is often never known. Brooks’ doctors don’t believe his two diagnoses are related.
Tristin’s mind raced, thinking of all the possibilities that lay ahead. Is Brooks going to live? Will he have a normal life? Will he walk again? Would he marry and have children? She wondered how they’d care for him, and who would care for him when she and Derrick were gone. “His ‘potential life’ flashed in and out of my mind for weeks,” says Tristin. Mostly, she wondered when she would wake up from her nightmare.
Brooks spent four weeks in the hospital, being treated with steroids and blood plasma to bring the inflammation under control. “It completely turned our world upside down,” says Tristin. “I took leave from my job so I could stay with him in the hospital. We were told that most recovery happens in the first six to 12 months, so we wanted to help him maximize that time.”
Once stabilized, blue-eyed Brooks returned to his cheerful, engaging self. Amid the fear and chaos surrounding him, he became a favorite of doctors and nurses in the PICU. As his discharge date approached, however, the family’s thoughts were dominated with “what next” questions.
Then, says Tristin, an “angel” in the form of Julie Johnson, MD, entered the picture. Dr. Johnson is a Physical Medicine and Rehab (PM&R) physician and Medical Director of Rehabilitation Programs at LifeScape. Her specialty is pediatric rehabilitation. “She was a light for me,” says Tristin. “I felt like she genuinely cared for us and was our advocate.”
Dr. Johnson helped get Brooks admitted to Children’s Specialty Hospital at LifeScape, the state’s only pediatric rehabilitation hospital. He spent the next three weeks in the Inpatient Rehabilitation Program getting intensive therapy three times a day to help him regain as much function as possible. The main focus was on physical therapy for his legs and core strength. Tristin closely observed the therapy sessions and asked lots of questions. “Becky, our PT, was there for me as a mom and there for Brooks to test out all he could do,” she says. “The appointments with the therapists were the highlights of my day because they gave me glimmers of hope.”
Knowing that he’d be transferred to LifeScape outpatient therapy made going home less scary, and the Plienis family says the transition from the LifeScape Specialty Hospital to home and outpatient therapy was excellent. Not only did their discharge planning have outpatient therapy set up, LifeScape sent them home with a walker, a wheelchair, and a bath chair to test. “They’re so good at letting us borrow equipment to try out,” Tristin says.
Brooks now gets intensive physical therapy and occupational therapy four days a week at LifeScape Rehabilitation Center in Sioux Falls. The intensives approach of high frequency therapies works with the brain’s heightened healing ability, or neuroplasticity, during the critical first year after injury.
He is making great progress in physical therapy to build his core and leg strength to crawl, with the ultimate goal of walking. He wears AFOs (Ankle-Foot Orthotics) and leg braces to help him stand. “Melissa, our current PT, has a very special bond with Brooks that I am so grateful for," says Tristin. “She takes the time to have fun with him and also challenges him with new equipment and new goals every week. We love our time with her, and I feel like she genuinely is invested in our journey, which we are so very grateful for.
LifeScape Physical Therapist Melissa Beckstrom says it’s helpful that Brooks’ family is so invested in his recovery. “From having to re-learn basics like rolling and crawling, to now having to master the more advanced skills of independent standing and walking, Brooks has an amazing drive and desire to move and participate in his family activities,” says Melissa. “I feel blessed and grateful to be a part of Brooks’ journey.”
Fortunately, Brooks has full use of his arms and hands, so occupational therapy is focused on core strength and balance to complement his PT goals. “Sabrina is now our OT at outpatient, and she is so wonderful with trying new things with Brooks and takes time to bond and comfort him.” Each step of progress is celebrated, and then a new goal is set and worked toward. “They gave me a huge boost of hope,” says Tristin. “I’m super excited at every gain Brooks makes.”
His parents’ goals for him are to be as independent as possible and to believe in himself. “I want him to realize that every milestone is a blessing,” says Tristin. “I want him to be happy and have the best life that he can.” Derrick and Tristin Plienis believe he’s in the right place to achieve those goals. "LifeScape has been a light in this entire journey,” says Tristin. “They gave me hope, and still give me hope moving forward.”